hi all, im new to this site and this is my first post.
Been suffering with what i now know is MAV for 3.5 years. Over that time the condition and symptoms have changed from no headache and dizziness for 3 months, to constant headaches no dizziness, extreme sensitivity to noise, brain fog, disassociation / de-realization (maybe the worst symptom),more dizziness, plus general feeling of not being myself / shitty - sure you can all relate.
Add to that the extreme anxiety / depression / moods, which i have never had before all this its been a truly horrible experience.
Seen 4 neurologists / loads of GP’s, ENT’s, Psychiatrists, Therapists .
Diagnosis of NDPH, Chronic Migraine (Vestibular Migraine - my first ever diagnosis), Depression, GAD, Burnout and prob a few more i have forgotten.
Treatments of Topirimate, Pregablin, Amitriptyline, SSRI’s, Nerve blocks, Botox, Amovig, Physio, Chiro, Acupuncture, diets (Keto), Cefaly
Still not sorted!
I came across MAV in sites like this a few weeks back and it convinced me that my first diagnosis of MAV was correct, although the treatment wasn’t (just from a normal Neurologist). My symptoms changed so much over the 3 years that its no surprise that the pieces wernt put together.
Dr S Anyway, I had a consultation with Dr S yesterday, who really understood and explained how the anxiety and moods are linked (and not my reaction to it), which was so good to finally have someone confirm i haven’t gone mad! He has put my on the C’s diet and has prescribed a blood pressure med (not sure which one yet), which i start next week.
I emailed Proff Luxon too and she has just got back to me offering me a consultation (Skype). I am tempted to have that as well for a second opinion (or 50th), but also dont want to confuse issues anymore and be torn over which one to follow.
Does anyone have a view on who they prefer or if seeing both is overkill. Appreciate it will be subjective etc, but any thoughts who be appreciated.
Welcome to the board.
I would keep a steady keel and try the treatment from Dr. S.
If you don’t improve you should consider another session with him and work out your next move.
Sounds like you’ve already seen a lot of doctors - have you seen other oto-neurologists? (Luxton is one).
I’ve seen a total of 5 different consultants. No shame in a few alternate opinions. They were especially useful in my case.
Thanks. Dr S is the first oto-neurologist ive seen (over the phone), others have all been “normal” ones, some high profile, and all say are headache / migraine specialists.
I think on balance that is the sensible thing to do. Im so keen to get sorted that i would see both! but appreciate doesn’t work like that.
Im like this every min of the day… Depersonalization / “dizzy” - had chronic migraine for 4 years or so in some degree or other, but daily now for 7m or so!
Effecting every part of my life… and im losing hope.
Are there any success stories out there? Im on 2mg of Candesartan (for the last 3 weeks) - prescribed by Dr S.
Rob it does get better. Hang in there!! Please see #success-stories-positivity
Thanks - seems never ending… hard to deal with at times.
Absolutely Rob. I was in the woods for about 3.5 years iirc … I thought it would never end … all my vestibular issues have gone though … just my hearing now!
I had been having episodic vestibular attacks for more than a decade before I became constantly dizzy. Then I was dizzy + other symptoms 24/7 for over ten months before I saw the neuro-otologist who diagnosed me and the diagnosis came just shy of me being like that for 12 months. I then started meds (Propranolol) shortly afterwards, increasing dose very gradually took several months and I was much as you currently are for another 8 months before the constant dizziness started to decline by slowly moving to start/stop mode. From there on things gradually improved. So from my experience I’d say it’s very early days three weeks of Candesartan. With this there’s no such thing as a quick fix I’m afraid. As @turnitaround has said hang in there.
Rob, the other thing I found weird about my condition and about my recovery, is there was no let up in symptoms for years, only changes, but not for the better. Then suddenly, over about 6 months, it mostly cleared up. Please note I dropped the drugs as soon as possible, as soon as I could function without them. I did not wait for symptoms to disappear. I actually believe that dropping the drugs helped with my recovery as I believe my brain had more chance to compensate without them.
Thanks all for your comments @turnitaround and @Onandon03 . It is a very long road and so difficult to live with daily. Also very difficult to asses progress, if any.
@Rob77 Hi, I’m new to this site as well and have just been reading your post with interest. My consultant has recently advised me to stop taking both my amitriptyline and betahistine to see how I feel without the meds. I’ve only been taking amitriptyline for just over three months, it made me feel so much better initially but then I plateaued. As with everything I try it seems. Betahistine I’ve been taking since October. I was advised to stop the amitriptyline cold turkey which I decided against and have been weaning slowly, whilst feeling slightly more “off” each day, then yesterday ended up in bed with the dreaded swimmy feeling, total exhaustion, nausea etc. Not feeling too much better today plus I’m so frustrated with all this! I’ve emailed my specialist to see if this is to be expected whilst my body adjusts or if it means I’m just not coping without the medication. In the meantime I’ve been reading lots about magnesium, diet, lifestyle etc. How have you been getting on with the diet you were given? I’ve had no advice about this from my specialist, but it seems to be something that a lot of specialists recommend before medication is even mentioned. I’m assuming that my specialist is doing things the way he is for a reason but am not sure what that reason is! Worrying as I’m supposed to be back in work in two weeks time so the days are going to get hectic again, which never helps. I’d be interested to hear your progress if possible, thank you
Hi @CB2006. Sorry to hear your struggling too. This is no fun!
Really hard to tell if anything is working, I don’t really feel it is yet. Had a consultation the other day and he said it’s very early days still. The diet is pretty straightforward and I’ve gone a bit further and am broadly following the HYH diet. Supplements the same, not sure if impactful.
Going up on candasartan, still on a low dose (2mg going up to 4mg).
V important to get the right doctor. This is the first one to mention diet really. (One was all about keto). I’ve had a few… hopefully this is the one!
Ha, yes, fun isn’t a word I’d use to describe this! Thanks re the diet info, definitely something I’m going to look into more. I guess we can all only try things, give them time and see what happens. Good luck with it all, update if you can.
Welcome aboard - I don’t get to contribute much myself anymore because my ancient iPad can’t cope and I very rarely use my laptop when I am not working. I was interested in your post as I see Dr S too and was also put on the 6 Cs diet two years ago plus Pizotifen. I have stopped taking the Pizotifen as of 1st June 2020 and it is a case of so far so good - I weaned myself off very slowly from October 2019. I have a telephone appointment with Dr S on 30th June to discuss progress and am expecting him to suggest that I can start reintroducing food back into my diet. To be perfectly honest I am not in any hurry to do that because, as as well as having an improved head, my digestive system has been so much happier. I probably should have been on the 6 Cs diet for years! I really trust Dr S and his treatment has worked for me, but if it hadn’t I would definitely have looked around for a second opinion. I hope the treatment starts to work asap - it can take a bit of time so don’t panic if it seems as if it isn’t working immediately. Jan
Hi @Janb, thanks for that. Good to hear you rate him. Im hoping he is the one after so many docs and treatments etc. So good to hear it’s working for you, I remain hopeful. He empathised the need for patience , which isn’t easy when you are constantly suffering, and for this amount of time, but have to trust he knows what he is doing. I’ve been put up on candasartan, and he said it can take a long time to get to the right dose and to become effective, so I have a way to go there. Do let me know how you get on after your next app, and hope you continue to progress. Rob
I hope you are OK and that the candasartan is kicking in.
I have just had my telephone appointment with Dr S and he has ‘signed’ me off - I have just added a full account on my personal diary. It has been a journey of 2 years and 3 months and at the start I couldn’t see my life turning back to normal , but Dr S has sorted me out thank goodness. I am not 100% and don’t expect to get there but am happy with 90-95% especially as the dizziness has gone and my head feels like it belongs to me again. Apparently the tinnitus is not likely to go, but most of the time I can ignore it - it get’s louder as the day passes and when I exercise, go in the car, and expose my ears to windy weather - I can’t ear a woolly hat in the summer!
Dr S confirmed that the Medway balance clinic is closing in 2 months time - he didn’t say if it would be set up anywhere else so I am assuming it might not be, but could be wrong. He seemed to suggest that he is expanding his private practice in Devonshire Place.
Interestingly with the diet Dr S has told me that I must stay off caffeine, red wine , mature cheese, marmite and dark chocolate permanently - I wasn’t expecting that, but it makes sense as cheese, red wine and chocolate are well known migraine triggers!
I shall keep checking in to this group so look forward to hearing about your progress. Take Care. Jan
Hi Jan. thanks for your message, I so pleased that you’re still doing well and you have come off meds. The remaining things you can’t have is a very small price to pay for feeling ok… as you say, white wine is good!!
It’s great dr S has sorted you out, i wish I had seen him from the start, but I wasn’t to know. My symptoms are a bit different and have changed over the last 4 years, I am always very headachy though, pretty much constant, for a very long time now, and it’s that I hate the most. Add in the dizziness, which is only slight, Noise sensitivity, D/P, anxiety and mood into the mix and its an awful cocktail…Esp whilst having a responsible job, wife and 3 young kids etc. I truly wouldn’t wish this on my worst enemy…
I had a follow up with Dr S the other day, apologies if I’ve already mentioned. He confirmed I’m on a low does and for a short time, so wouldn’t expect much improvement so far. I think I have a long way to go still…
I will see him privately in London.
Thanks again for reaching out. It means a lot to hear people get better… Let me know who you progress, and enjoy yourself!
This might mean you are healing. Change is a good sign imho. I don’t think you can equate symptoms to progress with MAV though as change will bring new challenges for the brain. But it may reflect a fundamental underlying improvement that is bringing you closer to full relief.
@turnitaround that’s true, It might mean improvement, or it might not. Deffo doesn’t feel like it.
I could wait another 4 years to see how much it changes from here? Then I could let everyone know and we can all debate whether change = healing?